Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

Abstract

This report should be referenced as follows:Brown KL, Wray J, Knowles RL, Crowe S, Tregay J, Ridout D, et al. Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study . Health Serv Deliv Res 2016;4(19). Health Services and Delivery ResearchISSN 2050-4349 (Print) ISSN 2050-4357 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 10/2002/29. The contractual start date was in October 2012. The final report began editorial review in April 2015 and was accepted for publication in September 2015. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Depart...

Identifying improvements to complex pathways: evidence synthesis and stakeholder engagement in infant congenital heart disease

“…The group met on five occasions (each 2–3 hours) between March 2013 and June 2014 to consider emerging findings regarding UK service provision and outcomes in this patient population. The research presented to the advisory group included: A systematic review of potential risk factors for unexpected deaths and unplanned readmissions following discharge;14A systematic review of postdischarge surveillance or intervention programmes;31Analyses of national CHD and paediatric intensive care audit data sets, which identified patient groups with different risk of death or emergency readmission to intensive care in the year following discharge 11

Interviews with parents and health professionals regarding their experiences at or following discharge;12 13 32

An online discussion forum with parents regarding their experiences accessing support 31

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“…This work builds directly on a programme of research that generated information regarding patient risk characteristics and the challenges encountered in accessing and providing services for this patient population 31. We propose that the systematic process developed and applied effectively in this work could have useful application in addressing service delivery improvement for other patient populations that can fall through the gaps between sectors and organisations.…”

Improving risk adjustment in the PRAiS (Partial Risk Adjustment in Surgery) model for mortality after paediatric cardiac surgery and improving public understanding of its use in monitoring outcomes

“…36,37 The diagnosis allocation algorithm results in 29 hierarchical diagnosis groups, and full details are provided in Report Supplementary Material 2. In short, for each episode, each recorded diagnosis code is mapped uniquely to one of the 29 primary diagnosis groups, and then the highest ranked (most serious) primary diagnosis is allocated as the overall primary diagnosis group for that episode.…”

“…6,92 Examples are reducing post-discharge deaths (3.2% for infants); addressing barriers to accessing care in the community; reducing complications following surgery; reducing loss to follow-up after hospital discharge, particularly when moving from paediatric to adult services; and improving reporting of outcomes for adult patients. 36,41,42,[93][94][95][96][97] The 2015 NHS England review of CHD services called for better reporting of quality using a broader range of outcomes relevant to a range of stakeholders, including parent and adult patient groups. 92 The facets of quality given above are merely examples, and different stakeholders will have different perspectives on the importance of different possible quality criteria.…”

Paediatric cardiopulmonary bypass surgery: the challenges of heterogeneity and identifying a meaningful endpoint for clinical trials

“…We are now operating on a greater proportion of younger, smaller patients; many with associated extra-cardiac anomalies and chromosomal disorders [3]. Ideally trials should report both immediate perioperative and postdischarge outcomes [4].…”